I read about a heartbreaking news story yesterday: A mother was in court in Ireland for smothering her toddler daughter to death after receiving her diagnosis of autism. The Mother was found to have a mental health issue so claimed diminished responsibility, as apparently she had believed that the diagnosis was worse than ‘mild autism’. So in her confused state, she must have thought that her daughter would be better off dead than autistic, which is a heart-breaking conclusion to reach. The spectrum is so broad, but perhaps that was not explained to her when she received the diagnosis, so perhaps all she could see were problems ahead for her daughter.
Even when Joshua had his diagnosis of ‘devastating brain damage’ at 4 days old, we never once thought that he would be better off dead than living with his disabilities. We have instead ,always fought for him to have the best opportunities in life by, for instance, sending him to a special school where they can meet his needs and even putting him through brain surgery, in the hope of getting rid of the demon epilepsy/ We were of course shocked to learn of Joshua’s brain damage, but we still wanted him to have the best quality of life that he can have. He is such a happy. smiling young man now that I am reassured that he does enjoy a good quality of life and he is starting to assert himself more, insisting on doing what he wants to do and refusing to do what does not appeal to him.
I wonder though if this mother was worried about the impact of the autism diagnosis on her own life too, not just her daughter’s. Perhaps she was afraid of the prospect of a lifetime of caring responsibility and could not face that life for herself. I can understand that fear, as it is a huge life-changing commitment and if she felt unsupported in that by family, friends and professionals, then perhaps that was simply too much to bear for her. I would like to think that health and social care professionals rallied around her to reassure her about the assistance that is available for her and her daughter, as it can feel a very isolating experience; you can feel as though you are the only one with a baby like this and that can be overwhelming.
I am simply trying to understand what horrors this mother felt to lead her to want to take her own daughter’s life and whether or not there was more that could have been done to help her to come to terms with the news and to equip her with the armour that she was going to need going forward. I am not saying that their life was going to be easy, but she could have been shown a more positive, hopeful future than she was imagining when she picked up that pillow.
There was speculation at Great Ormond Street that Joshua has some autistic traits when they assessed him prior to his brain surgery and this ‘diagnosis’ has remained on his medical records. I am not convinced, from the little that I know of autism and from the young people that I see at school. I think what led them down this path was his love of the same familiar movies endlessly – he only has three animated films on my iPad and watches them endlessly – and perhaps his ‘stimming’ – which in him, is hand-flapping and repeating words, and he used to bounce a lot pre-surgery.
However, there are other ways in which I do not think he is on the autistic spectrum:
- Joshua is a laid back young man who is not distressed by changes in his routine. He does not yearn for school when it is holiday time, although he is usually pleased to go back there. He takes his monthly respite stays in his stride and does not need lots of preparation in order for him to accept the change. Joshua has always been better at adapting to change than I am in fact!
- Joshua is exceptionally sociable – he adores mixing with people and he tends to invade their personal space, by putting his face very close to theirs, stroking their hair or offering bear hugs. He does not have a problem with eye contact or even entering a room full of strangers and he certainly does not prefer to hide himself away in those situations.
- Joshua does not need order in his life, he is a messy soul who has no desire to group things together or line them up in any kind of order. He is more likely to mess up a room or display rather than need it to be in a very particular way. With messy parents, he lives in a cluttered home and so he has simply embraced the clutter that he lives with.
- He does not have much real focus or attention to detail, Joshua has a short attention span and flits from activity to activity, leaving a trail of devastation behind himself usually. He would rarely sit focussed on a game or puzzle for long.
I questioned this ‘autistic traits’ description when it was first suggested, back in nursery school, when we were organising his statement. His very down to earth health visitor at the time said ” I don’t think that you need to worry about that now, hes got enough on his plate already”, so I chose to ignore it as she suggested, until it was raised again ten years later. The reality is that for Joshua, having an ASD diagnosis or not at this stage, does not really help him. He is who he is, he is already in a special school where autism is well understood, but they treat their pupils as individuals and teach them accordingly. Joshua does not need another label to add to his diagnosis, he simply is who he is and we love him for it.
I had a lovely day yesterday as I had invited three school-mums and their autistic sons round for lunch. The sun obliged by shining and so I cut the grass and we moved tables and chairs into the garden , so that we could eat outside.Four guests arrived early, which caught me out slightly but the boys went straight out into the garden and found the swing, so were happy enough. The third boy arrived but was reluctant to get out of his car, as this was a new environment for him. I tried leaving his mum to it and I tried tempting him with food, but in the end, after half an hour, she managed to coax him into the house, whereupon he immediately started jumping, as he was so relieved that it was fun and he seemed to adore the garden too. So all three guests were outside, but Joshua was firmly staying in his Den, he seemed rather overwhelmed by the surprise visitation!
We had quiche, pizza and salad outside and two of the three boys tucked in at the table, the third collected his gluten free version then continued running around with it, coming back for more when he was hungry. I bribed Joshua outside with the promise of food, he sat on the rug, waved at everyone, than ran back indoors so he had a plateful to snack on, in private. He was happy enough but not feeling particularly sociable, preferring the company of his Live8 show.
There was quite a lot of grabbing food off the table, for which the mums aoplogised, but I insisted that it really did not matter as it all needed to be eaten up and I love to see a healthy appetite. I enjoyed getting to know these boys better, as I know their mums through my school coffee-mornings, but I have had imited contact with their boys. The whole point of this gathering was that nobody needed to apologise, as we all understood, so it was not like a family party or going out with friends, where their sons might be the odd-one out. One mum put it well when she said ” Don’t worry, he is not going to do anything that will offend me at all!” There was no need to sit at the table – we had one runner and one recluse!! – so I hope that the mums were able to relax and enjoy the occasion, knowing that they were amongst friends. They have found the school holidays demanding at times, 6 weeks is a long time to entertain these hyper-active boys, but hopefully yesterday was a different kind of day when I tried to make them all, mothers and sons, feel welcome and at home in our home.
It was the final part of ‘The A Word’ on BBC last night and finally the family seemed to have come to terms with their son’s autism diagnosis; they finally uttered the words out loud to their neighbours, which was a massive step for them as they had previously wanted to protect him from the stigma of being different. I felt that I could relax now that they had admitted to themselves ,and to their community, that Joe was autistic as it had felt like a guilty secret before then. The reality of course was that their neighbours may not have been able to name or identify the boy’s disability, but of course they recognised his difference, so the admission was primarily for the parents. To watch them squirm to find the words to describe Joe’s behaviour to the willing search party when he was lost, was agony as they were desperately trying to avoid the word ‘autistic’. His parents really thought that nobody knew their son was not ‘normal’, and I can relate to that: when he was at pre-school age, I was amazed several times when strangers recognised, just from watching him, that Joshua had special needs. I really thought that he appeared ‘normal’ and was blind to whatever it was that they were seeing.
But the most poignant moment of the drama for me, was when Joe’s Dad voiced his grief for the normal ‘boy that was inside Joe’. His autism was regarded as a condition that had destroyed the son that they should have had, or at the very least had hidden him from view, and he mourned that loss. When Joshua was at mainstream primary school, we were offered ‘bereavement counselling’ – to be able to grieve for the son that we ought to have had and for the hopes and dreams that we had buried. I was shocked by the suggestion at the time and dismissed it as a ridiculous notion. But who knows, perhaps to have undergone the counselling might have saved us a lot of heartache in the long-run.
This BBC drama is finished now I believe and I have enjoyed it immensely : I have loved the quality writing, acting and the stunning scenery of the Lakes. But most of all I have enjoyed the reflections that it has given me each week, as I applied what I saw, to my own experiences.
As you know I am enjoying the BBC drama, ‘The A Word’ about a family with a young autistic boy in it and the whole family’s struggles to come to terms with his diagnosis. On Tuesday night, Joshua obliged beautifully by settling in bed at 8.50 so that I could watch it, this week, in real time and two things struck me most about the episode:
- The mother is so fiercly protective of her son, so much the Lioness with her vulnerabe cub, that she is accused of being a bully. She screams at, and even bribes, a therapist who connects with her son but refuses to help them on a regular basis, but refers him on. While it may be for dramatic effect, I can relate to this mother. She has been seeking help and has been lost in the wildernes of autism, she finally finds someone who appears to be able to relate to him, to get the best from him, but will not help. Her desperation is clear and she loses sight of anything else. I know that most mothers will fight for their children, to ensure they get the best that they need, but there seems to be an extra drive in the parents of of children with special needs: maybe it is because we have to fight for everything from the minute they are born, or diagnosed? or maybe it is because they cannot fight for themselves so easily? Whatever the reason, in Joshua’s 15 years, I have met with some pretty ferocious lionesses and I see myself as one too.
- There was a really tender scene that made me cry, although admittedly, that is pretty easy to do. The mother was trying her hardest to use the techniques that the therapist had used to encourage Joe to switch off his music in order to eat his breakfast cereal. There was a battle of wills and in the end, he threw the cereal onto the kitchen floor and she withdrew, totally frustrated. The teenaged sister calmly poured her brother another bowl of cereal, gently encouraged him to remove his music headphones, they shared a moment together and she ruffled his hair. While she resents her parents for neglecting her in favour of Joe, she does not blame him at all, rather she often rescues him from tense family rows. The beautiful sibling relationship was so well portrayed. I know a couple of families where an older sibling has this protective and loving relationship with their brother with special needs. As an only child, it is a relationship that I am sad that Joshua has never known really.
Evidently not everyone enjoys the emotional roller coaster of such dramas, but I do if they are well done and not too unbelievable. Generally my television viewing is escapism, so this choice might seem odd. I enjoy comparing this fictious family’s experience to my own and I enjoy the exercise of reviewing the accuracy of the storyline and narrative.Giving me an extra insight into how other families cope and what they might go through.Otherwise when I meet other parents, I only have my own experiences to help me to empathise and bond. Empathy is a useful skill that I use a lot when I meet new individuals. Next time at the school parent coffee morning, as well as discussing the books that we have found helpful, we may add ‘The A Word’ to our topics of discussion and hopefully it will not generate tears, but laughter. As there is humour, when you look for it, in these tales.Each special needs parent may be as pleased as me that these family struggles have made it to mainstream, primetime television and if nothing else, there might be more widespread acknowledgement of the difficulties that such families face and some recognition.